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Post by needadvise on Oct 28, 2006 21:44:22 GMT -5
bad news...well my blood work came back early, and i just got the dr.'s message. like i thought, all my tests for pcos are normal...i don't have it, my thyroid is great, prolactin, etc, but one test came back elevated, the one for endo (now i didn't expect to hear this, cause i thought they can only tell by lap, not blood test, so how bad must it be then?), an endo blood test??? new to me. and so he said, it's what he believed it to be, i have endo, like he says 'we discussed', (he said like 80% sure at the time, but i still had some faith i didn't, for vaious reasons), but still i really thought it could be something else, and now i found out today that any hope of that is dead and buried!
talk about feeling gloom and doom. why bother trying to get pregnant, when now iam sure it's not gonna work on our own, if ever. i didn't expect that to be involved in the blood work, nor did i think it could be. what choices do i have now. my husband says not to worry, just talk to the dr when he gets back from vacation in a week, but now what choices do i have? i gotto have the lap? my mom told me she had a lap and 4 months later the pain came back, she had another, they took out her ovary, and within a year had a hysterectomy. she was done having kids, but iam not, and she said a lap is useless and you end up hurting again and i might lose some organs, which of course i cannot spare. she does have a habit of liking to scare me i think, but she did go through what she went through, but of course, it isn't very supportive, when someone is fearful, young, and ttc.
*ugh* kind of ruined my evening, just cause eventhough i had some symptoms, i got alot of tests done when i was trying to get pregnant by the same RE last time, not long ago, if there was some endo test wouldn't he have seen it then, and if it's 'new' or something, the test i mean, what the heck is it called, and how come i never heard about it. being my blood being elevated for that, does that mean i have an extreme case of it, since so many say you need a lap for any answers? i know nothing can tell for sure, how bad, but a lap, but do any natural alternatives work, or just mask pain, and are a stretch. now i feel like iam facing a life long battle, and i know everyone here is facing the same, and are much stronger, and optomistic then i, but this is just one of sooo many things my life has been plauged with, and i can't handle anymore.
i just don't know how my life could be so horribly filled with turmoil, sadness, and loss, and i finally get a happy time in my life..first ever, all excited iam ovulating and trying to make another child, and this call comes, and just dashed my hopes. likely endo is causing that because it's been 13 months of trying, and with my last child we tried for years and nothing happened until RE help, and my husband wants to do things naturally this time, and now iam afraid that won't be, so w/o help, and him on board with it..ggrrrr. so frustrating!
i have had alot of pain the past few days, but it's O time, this has become normal. i feel sick inside, like i was hit with a sand bag. it's one thing to think you might have something, then to be in a decent mood, and then getting a phone message saying you definately do. it just sucks! iam sorry to be venting, i know what you all go through, i just can't take anything more in this freakin life! it's just the icing on the cake. if it was the only thing bad i have gone through or even 1 of 10 awful things, i could much more easilly deal, but you have no clue, my life has been like a soap operah, combined with a horrible nightmare, and worse.
ok....iam going to try and take an ambien or something, cause i can't sleep, and my ibs is starting to act up. iam sorry to vent away i just needed to get this out, and also ask the question, what the heck kind of test is he talking about?? i got a wait to ask him myself, so iam figuring if anyone would know, one of you might?
nite all
michelle
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Post by erzulie on Oct 28, 2006 22:49:39 GMT -5
I am curious to know what he called the blood test. I have read that doctors are trying to develop a blood test to determine if people have endometriosis, but last count I had, they hadn't come up with anything yet. If they had I feel reasonably certain I would have heard about it since I get newsletters from endometriosis.org and stuff and they always report on new research. There is one blood test that can indicate endometriosis, sometimes doctors check for ca-125 levels. I'm not really sure what that means, but I know that if your ca-125 levels are very high then you probably have cancer. They are also elevated in people with endometriosis, but usually not as much. Most likely he is saying you have endometriosis because your ca-125 levels are high, but not really high enouch to indicate cancer. Maybe you should call him back to find out for sure what blood test he did and why he thinks you have endometriosis. Even with the ca-125 test you can't be 100% certain until you do a laparoscopy, but it can give you a pretty good idea (many people are 90% certain they have endometriosis before the laparoscopy, but technically the diagnosis can't be certain without it).
As for your feelings of gloom and doom, it's hard not to feel that way right after receiving an unpleasant diagnosis. The rest of us aren't stronger, we've just had time to figure out how to cope. You don't need to give up so soon! I'm sure thirteen months of trying to get pregnant is frustrating, but it doesn't mean it'll never happen. It took my sister over a year to get pregnant with her first child, and she doesn't have endometriosis or any known reason for having difficulty. It's not time to give up trying yet, especially if you haven't even had surgery. A laparoscopy usually doesn't make the symptoms go away for long, if at all, but it can increase your chances of getting pregnant for a while. The doctor can do things like unblock your tubes, so for at least the first few months after the surgery your chances of conceiving might go way up. Maybe it would help to think of a plan for how much longer you want to try and what you plan to do if it doesn't work, but I think 13 months is too soon to give up. If my sister had given up that soon I wouldn't have my three-year-old nephew!
hygggggggggggg (that's a word of comfort from my new kitten)
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Post by ouchy on Oct 29, 2006 0:00:12 GMT -5
Hi, Michelle. Sorry you were hit w/ this all of the sudden! Too bad he had to go and ruin your weekend! I believe that erzulie is probably right--he probably did test your ca-125 level. It's still just another part of the picture and can't conclusively diagnose anything. You're right thinking that you'll need a lap to get a 100% diagnosis. Don't give up on trying for a baby! The best predictor or future pregnancy is history of a past pregnancy! Even though it may take time--which obviously is stressful and frustrating, you'll probably wind up P.G. sooner or later As far as your mom telling you a lap is useless, that's not always true. Had I not had mine, I would have wound up having an emergency surgery for an appendectomy or bowel blow out or something. You can read about that in my "laparoscopy stories" post. Even though my pain eventually always returns, it is nice knowing that I'm at least making it easier on my body by getting my intestines freed up from the endo every couple years or so w/ a lap. The endo on my bowels is what causes my IBS problems. If you have IBS problems, too, a lap might benefit you as well. Annnd, if you have having fertility issues, one of my friends tried for 10 yrs. to get pregnant--no luck. She also went to a RE who performed a lap. Endo was found, burned, and now she has a healthy little boy! Another plus of the lap is that there is an unexplained window of increased fertility! It's a pretty cool phenomenon if you are trying to get pregnant! Okay. Hope this cheered you up a bit. I know it's overwhelming sometimes! Baby dust to you!!!!
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Post by ouchy on Oct 29, 2006 0:05:09 GMT -5
hygggggggggggg (that's a word of comfort from my new kitten) You got a new kitten and didn't tell me??? You have to post an entire thread on your new baby, complete w/ pics!!!!
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Post by needadvise on Oct 29, 2006 6:18:47 GMT -5
thanks ladies, sorry i had a big rant last night, i really didn't expect a phone call to tell me that. plus, if that is the test iam thinkin, hmmmm....could i have cancer to? ovarian cancer runs in my family, they can't see the cancer on u/s, can they? i know iam young, and it hits pretty young in my family, not this young, but still... congrats on the new kitty, i got one myself:) animals are wonderful at healing the spirit aren't they? anyway, over the phone he made no mention of the lap or another appt., but i could call him with any question, ok here is my question, what's next doc? lol. i don't get why he doesn't take it more seriously, even when he was pretty sure before, he does know about my IBS always did, all my dr's do, cause they are utterly shocked when i tell them the severity of it. i had attacks when i was a pre-teen, before my period ever came (i was into sports and didn't get my period until 15), and i remember going to college by 17, the IBS episodes got worse, and more frequent, and as time went on, they just became part of life, like if an attack hit, time to dissapear for a few hours, ditch my plans, or try a tranqulizer quick, which may or may not help. is it even possible for me to have a mild case of endo, if it's been there this whole time, and my bowels are so bad? or must it be an awful case? i just can't imagine a surgery taking that IBS pain away, it's such a normal (yet awful) part of my life. me going #2 w/o pain and contactions, would be a miracle to me! that could be worth the lap all on it's own, if it worked on that. makes sense to why they never found anything really wrong with my intestines, which floored me...how could i not have a tear or something with so much pain for so long? they didn't know how nothing was there eigther, just labeled me ibs, said i have a slow tract then, and this was aka 'normal' for me. it isn't normal for anyone! i had times of going to the hospital to get it 'pulled' out of me (sorry tmi), that is embarrassing for a young woman, but i take all the pain i can before ever going to that point. i had 2 natural labors, 1 of them breech (ouchie), not even a tylenol, and they were almost a day long each, so i think my ibs pain helped me get through it, cause they are so similar. oh ouchy, it feels like a UTI again. just thought i'd let you know...it didn't go away for good *sigh*, must mean endo on my bladder. can't be good. i just imagine them going in there, me waking up and them saying, it's the worst they have ever seen, and that scres me big time. even now knowing it, i can guess in my head how bad it might be, but if you can have lots of pain and a mild amount, and vise-versa, i just don't know, but i tend to think the worst end of the spectrum. ya know what's funny is that i read somewhere, how some women tend to drink a bit of alcohol for the pain during their periods, and before i had these rx pain meds, i always needed (for the past several years), a couple glasses of wine to numb the pain, of the first day or two of my period, and sometimes during O, it would get bad, and it would dull it. i thought i was the only one, then i read it, and it made so much sense to me. it's like i wanted some answers, and God is just throwing every clue possible in my face so i know. iam just curious to if he did this blood test 2 years ago or not, and if it was elevated then? or maybe this test was not around then, but i sure will ask him. of course he's on vacation, but when he gets back, i'll ask him the name of it, to see if that is it, and if he did it last time, or it's new, and what he wants to do. i know the word LUPRON never crept out of his lips, so he must have something against that one (i have heard some not so great stuff about it, bone wise). is anyone here on hormonal therapy? i know that isn't an option when wanting to get pregnant, but afterwards?? this also explains why i feel much better during pregnancies. no period pain, and ibs episodes, much less frequent. always wondered why but then i didn't much care, just happy for it. i mean i'd have some episodes but by far not as bad. thanks everyone for your encouraging words or support. menatlly i have been drained dry over 31 yrs, and i just didn't think i could take anymore, but now what choice do i have? iam glad to have found this site. my mom is trying to scare me out of a lap (but then she made mention of a hysterecomy a couple weeks ago? nutso huh?), and some say it's a great thing, and i just wonder how bad will my case be? wasn't that scarey for you all going in for that first lap, wondering what they might find, how bad, and then you wake up and find out. soo scarey. i wish i could have a glass of wine to relax me, before hearing the results, lol. welp iam going to talk to him, see what he wants to do, discuss it with my husband, who bless his heart is really trying to play the good guy, which he is, but he's trying to say we'll have the test repeated, and go to a different dr., and do whatever we gotto, and..... in response iam like WOAH...hold on. a different dr isn't going to change my blood work, and i doubt a repeat test is going to be any different, he's just trying to keep me level, cause he knows what my life has been like, and wants me to hope, but i just see his thinking as naive, so all i said, though knowing he's trying to be of help, is 'i got it....let's deal with it. the test isn't wrong, my blood didn't get mixed up at the lab, nothing is gonna change it, so shut it' lol. i can understand why he'd be that way though, after all the other dr said PCOS yes,, endo NO WAY, and now look, it didn't fit the pcos, and i knew it. this has fit more and more, the more i have read, just like i said no pain w/ sex or exams, but who's to say that isn't coming? i gotto apologize for being frustrated at my husband, he means well, he just isn't facing the truth, even more so. he hardly knows about the disease, but i did catch him reading a site about it, and he shut it down when i came by. iam not insulted, iam happy he is getting educated. like i said, thanks soo much again! it sucks to know, it sucks to not know, so i guess to sum it up it sucks, but it's not gonna kill me right? is it? lol. oh and does endo increase your risk for ovarian cancer, or are the 2 not linked, except by a similar or the same blood test? i sure hope not, or i better get pregnant like tomorrow!! ((hugs)) to everyone here fr what you have gone through and are going through. hopefully we are very close to an altogether cure. that would be a wonderful thing, and no doubt it can happen. i'll keep you informed, and thanks for helping keep my head above water. wish someone had thought of this w/ the painful periods and all, years ago. i can see how it often gets misdiagoned, just like it did by my obgyn. hugs, michelle
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Post by ouchy on Oct 29, 2006 12:12:09 GMT -5
YUP!!! I have a "mild" case, yet my intestines were in pretty bad shape--giving me crazy IBS-type attacks, to the point where it was even thought that my gall bladder had given out! I couldn't imagine that having the lap and burning off the endo on my intestines would give me SOOO incredibly much relief in that department! To get graphic with you (sorry!), I went from having crazy unbelievably cramps and diarrhea after eating anything the least bit fatty/spicy to being able to eat pretty much anything right after my lap and for the next 10 months or so. I also (this is the gross part) noticed a difference in the consistency and diameter or bowel movements. If you start to imagine intestines that are all twisted and yanked in different directions becoming free and positioned like they're supposed to, you can imagine less pain during bowel movements, as there are no 90 degree turns to get around--everything just freely flows out! I also feel like I have a UTI again!!! I pretty much know I don't have one, but it's that feeling! I spent last night with a heating pad between my legs! Pretty attractive, huh! Luckily, I took my last b.c. pill last night (had to go back on the pill to shrink and ovarian cyst), and for me the pill causes drying-out of all of my parts--including my urethra . I'm hoping the UTI-feeling for both of us will go away!!! One thing I have found that helps like no other is drinking TONS of water! So much where you're peeing every 10 min. or so! Also, Alleve (naproxen sodium) helps quite a bit w/ the inflammation. And there is nothing wrong w/ being pessimistic about what they'll find--if you expect the worst and it winds up being that it is a horrible case, you'll be grudgingly prepared. If it is a "mild" case that is causing all this pain, you can be elated that it's not attacking certain organs, etc! I was expecting my ovaries and tubes to be the main sites of my pain, and it was my colon and parts of my intestines. That's bad but good news in that it won't affect my fertility. I think expecting the worst is a good thing. I'm always pessimistic, I think, but I don't get disappointed a lot, and I usually wind up being pleasantly surprised! Regarding drinking before periods, etc. My IBS-type problems are so bad sometimes that I pretty much avoid alcohol all together--especially the fruity-sweet drinks, which I love! I don't know much about the blood tests. My gyne. just told me that it's still not a diagnosis and he had to do the lap to be sure. I guess now that you know yours is elevated, a lap is a VERY important thing to do, and you should probably find a doctor who is proactive about performing a lap. This one sounds like he might not want to do it, so he may do a 1/2-assed job if he should be the one to perform the surgery. I've done chemical hormonal therapy in the form of birth control pills. I'm supposed to start a diabetic drug today (I'm not diabetic) to regulate some of my hormones (FSH and LH), so hopefully my ovulation will be more on time and less painful. I prefer natural hormonal therapy--plant estrogens, plant progesterones, etc. You can find a whole forum on that, though. Pretty interesting. Take a look. I know what you mean about feeling completely drained, but somehow we all manage to keep on trudging along--and I have no idea how! I look back at some of the things I have gone through and am convinced I could never have the strength to go through some terrible stuff again, but if it happened, I am sure that somehow I would manage. I guess, because you don't really have a choice, you just have to react, even if it is like you are on auto-pilot and just living and going through the emotions. I am obviously pro-lap and everyone knows it. Not really for a pain-relief method, as the endo pretty much always finds a way to grow back. I just think it is a GREAT tool for knowing what is really going on. After my laps I still had pain with periods, but it was more centralized. My doc. thinks I probably have adenomyosis (endometriosis of the uterine muscle). But as I want kids, the treatment for that is NOT an option (hysterectomy). Anyway, if you have such bad bowel troubles, I think a lap might do you wonders of good. And if the doc. goes in and doesn't find endo on your bowels, it's one less thing to worry about! A lap gives you a sense of control over your body, as you will know exactly what is going on w/ your organs inside, and it gives you more knowledge of how to relate the pain where you think you're feeling it to where you really ARE feeling it (like how I thought it was my ovary and wound up being my appendix). Another way to look at it is if your mom may have had her surgeries today, she may not have considered a lap useless. Some women avoid hysterectomy by having the endo lasered off every couple years or so. The procedure has really come a long way. And a different doc. may not change your blood test level, but his plan of attack might (hopefully) be different! He may see the level and your symptoms and want to do the lap A.S.A.P. Also, the lab could have made a mistake on your blood test, and you can always ask for a re-test! Good luck with whatever you decide, and please keep us posted! Hugs!!!! ~Ouchy
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Post by ouchy on Oct 29, 2006 12:40:22 GMT -5
^^^ Forgot to add that during the lap the doc. might actually find a hernia or something else that could cause the bowel obstruction you are having!
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Post by erzulie on Oct 29, 2006 12:49:58 GMT -5
Wow that was a long response, I don't know what to say first!
Ok, to get the off-topic part out of the way, I got the kitten on Thursday and have been too busy to post a big thread...I didn't say anything because I'm planning to post a thread with pictures but I'm having trouble getting the pictures uploaded so I will do that as soon as i can.
It is certainly possible that you have a mild case, but only surgery can determine that, so that's another reason to have it done! A lot of doctors don't bother with the blood test, your doctor is being thorough which is good and it's also good that he's not recommending Lupron right off the bat, that means he's not being swayed by drug companies. The not-so-good part is that he's ready to diagnose you just from the bloodwork. The bloodwork is a strong indication, but not a certainty, so the laparoscopy is still a good idea for all the reasons already mentioned. Also, here's the bad news: people with endometriosis DO have a higher risk of ovarian cancer. If it's in your family you should definitely get checked for it, and that's another reason for the surgery! It can happen at any age. I read some sobering statistics on ovarian cancer once: 90% of people who get it die, yet 90% of people who caught it early make a full recovery. That means almost no one catches it early! If you're high-risk you should definitely be checked regularly even at your age (I once knew a 21-year-old with it). If you get screened often enough you have a good chance of catching it early if you ever get it, and if you catch it early you'll almost certainly be able to get rid of it, so there's no need to panic just be prepared! Cancer is one thing they always check for during a laparoscopy.
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Post by erzulie on Oct 29, 2006 12:57:53 GMT -5
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Post by erzulie on Oct 30, 2006 12:02:16 GMT -5
Oh another thing...I've heard a lot of people with endometriosis mention using wine to help with the pain and stress. It is actually NOT a good idea to do this, not just because the daily consumption of alcohol to relieve stress is exactly what makes people alcoholism, but because alcohol is VERY bad for endometriosis. It contributes to the production of the type of prostaglandins that make you have cramps, it depletes B vitamins in your body (B vitamins lower your estrogen levels, and since most women with endometriosis have high estrogen--and estrogen feeds endometriosis--lower estrogen levels is usually a good thing), and it impairs magnesium absorption (a bad things because magnesium relaxes smooth muscles and can prevent cramps). It also depletes zinc (which is an anti-inflammatory; a lot of endometriosis pain comes from the constant inflammatory state in our abdomens) AND it increases your risk of cancer (especially breast cancer). Basically, of all the foods people with endometriosis need to avoid, alcohol is probably number one. It may decrease your pain temporarily, but it causes you a LOT more pain in the long run. It's even worse than caffeine or red meat, the things everyone knows they should avoid!
(all the information I just posted came from the book Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and the Endometriosis Association, in case you are wondering)
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